A Party Lingers

 The best part about having my "Celebration of Life" now, rather than later, is it's over and I'm not dead yet.  

I've attended, or conducted, a lot of "Celebration of Life" services in my time and not a single person being honored ever survived.

Flipping my Celebration of Life to now, rather than later, now leaves me in uncharted territory.

There are no guidebooks or Funeral Director advice on what to do if you survive your service so we're making it up as we go.

The Celebration's over but a little after party lingers.

I love summer, so I'm delighting in it one more time.

Sarah built a pool in the backyard that Che and I float, talk and play in almost every day, and I'm delirious that I can still manage to do it after 5 years of all this cancer.

Lainey drags me for a walk most mornings (we call this "exercise" in our house), into a nature preserve complete with trails, forests, lagoons, marshlands, ball fields and I am overwhelmed by the beauty of the earth, sometimes to tears, so blessed I can still get outside every day.

Sarah makes plans for the things we're doing soon, from Beach trips to concerts, and I get caught up in the excitement.  

"I gotta keep giving you reasons to live," she smiles, and I am baptized in hope beyond hopes that they'll happen.

They give me Banana tree roots for Father's Day and Che gleefully tells me I have to live until they bloom.

"It takes a year to a year-and-a-half," Sarah adds, grinning, and I'm reminded that this is it, time's running out, and if I'm going to enjoy what's left of this life, I better do it now.  

Sarah and Che talk about the future sometimes, where they might live, possible schools to attend, things they want to do when they can, and it gives a sense of closure that the people I love most are going to be alright without me.

Sipping red wine, flying high from the garden, I thank God for the Holy host of Angels who made all of this possible, celebrating my celebration in the most tangible ways, as part of GoFundMe contributions or stopping by with gifts from the Garden, and I'm overwhelmed by the love we feel.

"You look good!" I'm told and I am so grateful that, externally anyway, people tell me and seem sincere, reminding me of all the symptoms I've dodged so far.  

In spite of everything, I know how blessed I am and thank God out loud several times a day.

How long the party will linger is anyone's guess, and we've learned to not think about things happening next week, much less next month.  

We stay caught up in one day at a time, and that's plenty enough, so we remain focused on the moment.

Though Sarah's always planning, and with this gift of time and enough health left, I wouldn't be surprised if she's got another Bucket List item to cross off for me.

Who knows?

During my Celebration of Life on the cruise, I chronicled every sunrise and, one night, all three of us watched the setting sun together.

Now I look at the pictures and note how hard it is to tell the difference between a rising sun and a setting one, blurring together into one vast, and incredible display of light, color and majesty. 

It's hard to tell the difference between the beginning and the end of the sun's coming and going, and I find great comfort and hope in it. 

                         ********

You can help my Celebration keep going all the way to the end at https://gofund.me/ffda4f4b

I Love, therefore, I Am

 

My preferred way to die is after lunch with Sarah and Che. These days we sit at the little table in our dining room, eat, chat and laugh.

An hour or so later, I stumble to the hammock, under the shade of the trees in the backyard.

I love laying in the hammock.

When I think about it, it would be an excellent way for me to go.  

Sun shinning on my face, swinging on a soft breeze, fall asleep and that's it, I die.

Clean up would be easy for Sarah and Che because I'm already basically rolled up in my personal Shroud of Turin.

We still have to figure the disposal out, but we'd just assume they leave my body on side of the road, and let the County cover it as a pauper's funeral.

It's frigging expensive to take care of the diseased in this country, thousands of dollars which so many can't afford!

So there's the whole after death mess to plan but I'm more focused on how I'd actually prefer to die peacefully in the hammock.

But then I get to thinking about it.  

Che loves the hammock like I do, often diving in with me so we can swing, play, sing, talk and cuddle.

It would suck if she dives into the hammock like she normally does and I'm dead.

That takes all of the joy out of dying in my hammock.

No matter how I envision it, my death leaves physical and emotional messes behind for Sarah and Che to clean up.

In the end, there's just no great way to go.

It defies planning.

Sarah's a big planner so I've not given up that she'll come up with a workable solutions.

Surprisingly, the words of Rene Descartes float into my head, "I think, therefore, I am."

I've always thought this to be as real as it gets when it comes to human existence, but laying here in the hammock, and I think there's more to it.  

I love, therefore, I am.

That seems more sound to me. Perhaps not as logical, but it feels more right, and I ride my feelings with wild abandon now.

"Love never dies" I was taught in Sunday School and I've believed it with everything in me.

Now I'm going to actually see.

                             *****

You can help my Celebration going all the way to the end at https://gofund.me/ffda4f4b

Not Killing the Celebration Just Yet

 

To each of you who bought in on my celebration of life now, rather than later, I want to express my sincere and heart filled gratitude for helping to make it happen. 

You can never say "Thank you" enough in life, Ben S. Barnes taught me that, and I still have some life left yet, so I'm expressing my sincere gratitude. 

As far as "Celebrations of Life" go, mine was epic!!

And I happily lived through it!!!

Not a lot of people can say that.

Anyway, the 8 day Caribbean Cruise to Aruba, Bonaire and Curacao, with Sarah and Che was as perfect as a sunrise on the Sea. 

We mostly hung out on our 2nd deck balcony, literally right above the Sea, so the view was always impeccable and we were content sitting there together.  

Eating was fun too, though we never made it to the dinning room, so I packed pants for no reason. Instead, we'd leave the balcony and make our way to the buffets for whatever we chose. 

I drank like a fish, ate like a pig and still lost a pound when the cruise was over. 

We just enjoyed being together. 

The biggest excitement was Che surprising us by entering the Hula Hoop competition, making it to the final round, coming in 4th!

Sarah and I dance together to "Wonderful Tonight" on a balcony in the Atrium, until Che cut in to finish the song.

It was a perfect celebration and now, blessedly, life lingers, so there's an after party for as long as we can keep it going.

I've been surprised by many things in life. 

Messy endings, glorious failures, obtaining Congressional funding for homeless people that the Congressman had absolutely no idea he'd sponsored, and people who don't do what they say they're going to do, left me suspicious of things sneaking up on me.  

Like dying.

It's time to get serious about it.  

It'll happen quickly when it happens and I think, hope, and pray it's convenient. 

Sarah and Che have enough emotional overload over the past 5 years of caregiving, and I don't want to add to it. 

So the first part of the celebration comes to an official end, though spontaneous and unsanctioned toasts and prayers may continue for a while. 

When I'm gone, life goes on for Sarah Che and Lainey, and it should be a celebration of new beginnings.

There's nothing to be sad about.

Our time together, and the intensity of the love and friendship, is the apex of a strange and wonderful life, coming to a climax now and I'm going to drag this out as long as I can. 

In the meantime, I remember the words of another mentor, Frederick Buechner. 

"The life I touch for good or ill will touch another life, and in turn another, until who knows where the trembling stops or in what far place my touch will be felt. To be wise is to be eternally curious."

Say what you will but I've often been reminded that curiosity kills the cat, which is probably why we're dog people, but it's got me pretty fueled right now, about Sarah and Che's future.  

And about mine too. 

                          *****

Continue the Celebration at https://gofund.me/ffda4f4b

Living and Longing

 

Every morning I'm up, waking-and-baking, sipping coffee on the 11th deck, watching the sunrise, with a handful of fellow cruisers.

Josh and his wife sit at the table beside me. They're giddy cruisers, taking advantage of everything, smiling and bleary eyed, they greet me warmly, and we baptize ourselves in golden beams bouncing off of the Sea. 

I marvel at a lone bird circling the boat in the middle of the Ocean. 

How in God's name does it do that?

And why?

After the sunrise, I seek shade on a comfortable outside sofa and collect whatever thoughts I have. 

I am mindful of the passing of things. 

I've loved the Caribbean my whole life and spent a lot of time and money here. And I've loved every single second of it! It's been my constant sense of longing since I first visited decades ago with my Dad. 

Now, I'm mindful that somehow Sarah's pulled off a perfect celebration of my life now, rather than later, and in all likelihood, this is my last time here, so I'm soaking everything I can in to carry me till the end.

Before any melancholy sets in, Che surprises us by entering and winning the 1st round of the Ship's Hula Hoop competition, and I'm cheering wildly. 

Living and longing. 

What am I longing for?

I don't know. 

Safety, security and comfort for Sarah and Che. I long for those things.  

I long for their happiness after I'm gone.  

I long to stay here, meaning I've never been on a trip to the Caribbean I was ready to end, and I'd just assume this cruise continue. 

Sarah's already thinking about home and work. Che's also ready to reconnect with her friends. We miss Lainey. 

But I'm not ready.  

I'm going to miss it, but I'm grateful as Hell I got to be here one more time.

This part of my Celebration is coming to a close, though I long for it to continue a bit longer, as I get to live into Summer again, warding off the evils to come, one day at a time. 

"Keep the party going," Jimmy Buffett allegedly said from his death bed.  

I raise this Pirates Punch to that. 

Yo Ho Ho. 

A Sailing Celebration (of Life)

 

Sliding into the unexpected warm salt water pool, I hear Che squeal in delight before I fully submerge. 

And for a second, maybe it was a thousand years, I float, safe, secure and happy, as others kick and splash above me.  

As soon as I break the surface to breath, Che body slams herself into mine, and we swim together laughingly.  

Sarah smiles sitting poolside watching. 

It's been a long couple of days getting here again, cruising away together, and we're as tired as Che is excited. 

Looking at Sarah just before I slide into the pool, I sigh, "Oh Che don't make me do this" because honestly it's the last thing I feel like doing. 

Sarah nods, I slide and Che squeals. 

The magic moment, floating there in a womb, ready for what's coming next and we spent the next hour swimming, hugging, splashing and laughing. 

It's an idyllic beginning.

Reality quickly reclaims it's throne as overly excited Che wants to do everything on the boat at once, while Sarah and I are ready for bed!

Two days later, we crash. 

It's hard to leave the room, though we manage several excursions, but are mostly content to watch the deep blue Caribbean Sea outside our cabin.  

My celebration of life now, rather than later, is going as beautifully as I could have imagined, squeezing every bit of love we can out of these moments. 

As far as "Celebrations of Life" goes, this one's kicking off just fine. 

                          ******

If you'd like to help part continue to it's end, just hit the link.  https://gofund.me/ffda4f4b

Not Forgetting How to Live

 

Sarah says I was hard enough to love before I got cancer but I'm far worse now. 

She laughs as she says it though the words convey the truth. 

Making it worse, she'll continue caring for me until I die, while planning a future for her and Che without me. 

Throw in the idea to celebrate my life while I'm still here with them, and killing a funeral for later on, it's up to Sarah to do all of the planning, which she does, and then has to drive us to the places we go. 

That's a lot of work. 

I hope it's worth it. 

Planning for our cruise, our cancer specialist calls for a quick review of how I'm doing. 

Sarah and I hold hands. 

It's a fun conversation. He asks about Che.  Delights in the cruise. Checks how Sarah's feeling about things.  

"It's refreshing how honest you are," Dr. Starr says. "People forget how to live when they're going through this."

Sarah and I nod. 

"Living well is the best revenge," he muses, stroking his beard and staring off for a few seconds. 

Arranging to call back soon, we congratulate each other and hang up. 

Sarah and I smile. 

Later, Lainey's dragging me for a walk (we call this exercise in our house), and Sarah texts me Dr. Starr's official report. 

"Michael has a good understanding of his current situation and is at peace with his current decision. He is living his best life and it is really refreshing from my standpoint."

I think I do have a clear understanding of things. 

Sarah, Che and I get to do it again!

That's all that matters.  

Living my best life while I'm dying.  

Just not yet. 

It's time to celebrate our life now!

Who care's about later?

                            ****

If you'd like to contribute some drinks and arcade money to the celebration, just follow this link. 

 https://gofund.me/ffda4f4b

It's Time to Celebrate

 

It's hard enough having lots of cancers and watch tv when, regardless of the show, someone has cancer and dies.  

It's hard for me to get excited about that kind of entertainment. 

Plus, I have little control of my emotions anymore and cry over most anything now. 

Watching a movie with Sarah, huge tears rolls down my face and I have to leave the room numerous times to collect myself. Needless to say I'm don't watch many movies anymore. 

It's often the same scenario when we're out in public. 

Too many social interactions leave me emotionally exhausted and physically drained, which leaves me with no energy for Sarah and Che.

We go out when we can, often forcing ourselves to, because it's safe inside the bubble we've built in our home. 

Wonderful friends offer to visit, take me out, on a road trip,  or even set up a band in the front yard for a live concert (which was done when I was first diagnosed with pancreatic cancer). 

As marvelous as each of these are, the truth is I'm not emotionally capable of managing them much anymore.  

It puts the onus on Sarah, who's already exhausted from 5 years of chronic caregiving to me, working full time taking care of 20+ Developmentally Delayed persons, and full time parenting, so we mostly stay inside of our bubble, even when we're out. 

Life in our Bubble, as we call it, keeps me functioning a near normal life, most of the time. 

It can get depressing and Sarah and I spend a lot of time talking about how NOT depressed we are!

"It's time to go," she announces, "and get this celebration of life back on track!"

Second grade ends for Che next week, a great milestone to celebrate, so we're taking the bubble on the road. 

Actually, on a boat. 

We sail on a Carnival cruise into the Caribbean!

I'd prayed there'd be the chance to do it again, with the Wonder of a Woman and our Love child, who keep me very much tethered inside this realm! 

It's time to celebrate them!

And the fact that I'm still here to do it with them. 

So for the first time in a long, long time, we're beyond excited and thankful as we party like it's the end of the world!

                          ****

If you'd like to help this celebration be everything it can be with drink packages, arcade money for Che, gambling money for Sarah or a special treat, no one deserves it more than them. Just click this link 

https://gofund.me/ffda4f4b

Caregiving through your Birthday

 "What's wrong? Sarah asks, standing in the dark hallway, staring at me with wide eyes. 

I'm nestled on the sofa, waked-and-baked, surfing the Whole Wide World in my hands, listening to good music, in the soft glow of a fire burning on a beach illuminating from the TV. 

"Nothing," I smile. 

She rubs her pillow hair, yawns, "I was dreaming" and shuffles back into the darkness to bed. 

It's only 5 in the morning. 

It's bad when your caregiver dreams about caregiving. 

Of course, I do lots of things that keep her up at night.  

Covered in pollen, I lovingly wash the car for Sarah, so it'll be nice and clean when she leaves for work visits. Everything's great, until I forget to put the windshield wipers down before slamming the hood shut. 

Somehow, she manages to put them back in place and functioning before leaving for her appointments. 

A few days after, I'm happily weeding around the oasis of a backyard Sarah's put together for us, and toss the hose in the pool to move patio furniture. 

"WHAT THE HELL HAPPENED?" Sarah screams 4 hours later when water's overflowing the back yard and our perfect pool looks funny. 

"Shit!" I curse to myself, happily laid out on the sofa with Che. 

Hours later, after Che and I are asleep, Sarah finishes reassembling as best she can, the stretched and slightly caddywampus pool. 

She's sore as Hell the next day but does manage to give me the finger. 

These things bother me so I pull myself off of the sofa to resume self-medication and reheat my coffee and, turning on the light above the stove and see Sarah's note. 

"Did you turn off the stove?" is written in dark blue letters on a soft blue paper and taped on top of the clock. 

Recently I do fine cooking, but apparently there are concerns over me making sure everything's shut down when I'm finished, so Sarah made me this reminder. 

No wonder she dreams about what I  may be doing because lately these are the things I've been doing. 

It's Sarah's birthday and, she's tired.

It's also Mother's Day and, she is tired. 

Che and I are baking a cake that Sarah bought for the occasion(s) last week. 

She planed it out because she knows that's pretty much all I'm capable of doing. 

What can I do, except wish. 

Happy Birthday Sarah!

Happy Mother's Day too!

You're the gift that keeps me living, fills our home with love and laughter while holding us together and believing in the future we still share. 

_______

You can celebrate Sarah too with thoughts and gifts via 

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Our Celebration of Life

 

A typical day in the Celebration of my Life begins about an hour after I go to sleep because of prostate cancer, and it takes forever to pee in the dark. 

I return to bed and the episode repeats itself two or three times before I curse God like the Prophet Jeremiah did, get up and shower.  

Lainey's waiting for me on the sofa when I stumble through, heading outside to wake and bake while the coffee brews. 

All is calm. 

All is bright. 

The silent night drives me crazy!

Back inside, I search YouTube for  a burning fire on a Beach to give the room a warm glow, stick AirPods in my ears, find my tunes, crank it up, grab my phone and I've got the whole wide world in my hands.

The first sip of coffee is still something to die for.

Pausing, I look at the flickering lights from my virtual fire, and collect myself. 

Fifteen months after stopping treatment for pancreatic cancer, I have far exceeded anyone's expectations. 

Now the pressures really on to keep it up!

"I really think," Sarah tells me over a nice lunch, "you are going to live forever and I wasn't really ready for that."

Bursting into laughter together, I shrug, "Yeah, I think you're right."

I think about Moses getting to see the Promised Land but never able to enter. 

I think I'm in the Promised Land and will eventually see it, in my rear view 

I focus on the now and try not to think about the future. 

The future will be different, if it's anything at all. 

But in some crazy way that I don't understand, I'm not frightened of it.

Hell, I can't wait to see what happens next!

If there's anything to see. 

It doesn't matter. 

Life is a gift that none of us asked for but everyone got. 

Maybe there'll be other gifts but to spend time hoping and praying for more takes a lot of energy and focus away from the marvelous present I have now.  

That's all that matters.

"DA!" Che calls from her room, finally waking up. 

Rushing inside, we snuggle as she stretches. 

"Pool today?" she suddenly asks, blue-green eyes popping wide open. 

"Yep," I laugh with her and our day begins. 

Because so many have invested in our Celebration of my Life, Sarah's been crazier busy than she normally is! 

Let's be honest, caregiver love is the most amazing love. 

Anyway, after work, she's gone to work and built an oasis for us to enjoy the summer.

Here we are!

Baptizing ourselves in now. 

Because that's all we've got. 
_________
Thank you all for making it a party!

                             ****

____________________________

Post Celebration planning is already underway at https://gofund.me/ffda4f4b

My Fifth Year Anniversary

 

Five Years is a long time to survive. 

"It's pancreatic cancer," we were told for the first time on April 17, 2000. 

It was devastating and, as best we could, we prepared ourselves for the worse. 

The overall five-year survival rate for pancreatic cancer hovers around 13%. 

If the cancer has spread to distant organs, like mine, the five-year survival rate is only around 3%.

Say what you will about me, I'm a survivor. 

So far anyway. 

I am a very different person than I was when first diagnosed. Multiple surgeries, 3 years of monthly trips to the Mayo Clinic for chemo injections left me scared and changed. Energy and focus became precious commodities and a "people person" quickly learned he can no longer "people" like he did before.

The images and feelings since my diagnoses are a jumbled, ever spinning kaleidoscope that pass by so quickly I can't grab hold of to really remember. 

The one that stays with me though, is from after the big surgery, the 10 hr Whipple. 

There's a picture of it. 

I get up to walk. Sarah and a nurse pull me out of bed to stand. IV's run through my arms and I hold onto the cart with one hand, and Sarah's hand in my other. 

She pulls to the future. 

Fast forward to me today, defying death by smoking weed, sipping wine, petting Lainey who keeps constant vigil over me, incredibly humble and most thankful to still be here. 

Che's at an after school play date. Sarah's helping Laurel with foster puppies. 

I have these moments to give thanks. 

I no longer question it. 

I was referred to as "the man who wouldn't die," recently and it made me smile. 

I'm thankful every single day, when I open my eyes, that I get to do it one more day. 

Day by day by day. 

                         ***

Having the celebration of my life now! Be part at https://gofund.me/ffda4f4b

Thank you!

Just Another Day

 

"Sorry Dad," Che says in the darkness, "I'm just checking to make sure you aren't dead."

She's pinching my big toe to see if I'd dozed off on the sofa or died. 

Waking, rubbing my eyes and grabbing her into a hug, I laugh, "I'm not dead yet!"

Che grabs her phone, wraps herself in a blanket, cuddles beside me, surfs TikTok and wakes up slowly. 

I've been awake since 2 am, and it's rare I dose off, but I did, and Che assumes the worst, only to immediately accept, and celebrate that life as we know it, goes on for another day. 

I marvel at her "take it as it comes" approach to whatever she encounters. 

"Oops, Dad's either asleep or dead," her thought process goes, "I better find out which?"

AND SO SHE DOES!

She's just as pragmatic when I wake. "Oh good! You're alive! Let's cuddle!"

And we do. 

And I feel her skin on mine, listening to her breath, the loveliness of her laughter, and I resolve to always feel as I do now and never forget the love. 

I wonder where the memory goes when I go?

Lately I've come to think I go back to whatever I was before I was born, though I have no idea what that means. 

It makes sense we revert back to energy, which it seems, never dies, so maybe we got the story wrong about what's life after death. 

Energy sounds nice.  

I have so little of it these days. 

It excites me to think that's what I'll become when I die. 

Cleo, the foster puppy, barks and Che and I instantly jump up to take her outside. 

Sarah rushes out of the bedroom at the same time, and we get busy, taking care of business, tending the dogs, getting dressed, making breakfast and sharing our plans. 

It's just another day. 

Thank God!

And tomorrow I hope I get another one because, there's no day but today. 

_________________ 

Thank to so many wonderful friends I am actively engaged in my "Celebration of Life" NOW, rather than later, with Sarah and Che. We are eternally grateful for you.